Winner of 2016: Stevie Wills for the entry, “Disempowering Support” which addressed the question, “Describe your experience with the contemporary health care system. What in your opinion are some of its major pitfalls? What needs to change for the sake of collective movement towards wholeness and psychospiritual health?”
My experience with a disability support worker demonstrates that harmful pitfalls can be found within disability service. For people with disabilities to benefit holistically from the assistance of support workers, support workers must hold the values of respect, dignity and empowerment.
I’m a performance poet, public speaker and advocate. I work for CBM Australia, who work to empower people with disabilities who live in the poorest countries. I have cerebral palsy. As part of my work I’ve travelled a number of times from Melbourne to Canberra to attend Micah Australia’s Voices for Justice. Voices for Justice is a gathering of Christians from across Australia, lobbying the government to increase the Australian Aid budget.
Last year a colleague wasn’t available to support me as I travelled to Canberra. It was arranged through an agency for a support worker to assist me. When I met her at the airport in Canberra I offered my hand for her to shake. Instead she held my hand. When we got to the car I told her that if she holds her arms out, palms up, I can use them to balance and get myself into the car, bearing my own weight. She began to do that, but then she wrapped her arms around my waist. I was no longer able to bear my own weight. I learnt it was futile to state the support I wanted, and didn’t want. She often referred to me as ‘Darling’.
I performed a poem during a church service that evening. While on stage, I choose to leave my walker or wheelchair behind. But I couldn’t trust her to assist me onto the stage in a dignified way. I remained in my wheelchair.
In the hotel that evening I told her I didn’t need help dressing, showering or getting into bed. A few times I was asked if I was sure. I said I had a cup that has a lid. “Oohhh fancy” she said. My cups are not fancy. They enable my independence.
The following day she arrived at the apartment earlier than we had agreed. Having yet to finish preparing myself for the day, I went to the bathroom. I asked her to shut the door while she waited outside. Killing time at the Café’ in Parliament House I told her that I don’t like being in my wheelchair all day. At home I mostly use my walking frame. She said “I should have rubbed some cream on your bottom”. I felt incredibly uncomfortable. She assumed her entry into my privacy without the need for caution. I counted down the hours before I could get on the plane. I wanted to get away from her.
She expressed her admiration of my poetry performance. She said I was one of the most intelligent people she’s ever met. Not long after that she questioned, for a few minutes, my decision not to take my drink bottle with me as I met with a politician. Feeling so uncomfortable I wasn’t present in mind during the political engagements. As I departed for Melbourne, she kissed me on the cheek.
Discomfort remained with me for weeks. She had entered herself into a private space, close to my soul. I couldn’t push her out of that space, away from me. I felt grime within.
I regretted that I didn’t speak up for myself whilst in Canberra. Over time I realized there were several reasons why I didn’t. I assumed people working in disability services would respect people with disabilities. My experience was unexpected. My energy was limited, and hence directed to the poetry performances and political engagements. I didn’t know the support worker, or how she’d react if I spoke up for myself. I depended on her, thus kept the peace with her. Assistance is responded to by gratitude. Feeling violated, I withdrew further. It was stressful and embarrassing to tell my colleagues of my experience, despite their respect, professionalism and concern. I don’t talk to my work colleagues about my bottom. It’s difficult to make a complaint against someone who considered herself helpful. I imagine it would be painful to realize she had violated someone.
After those two days with the support worker, I returned home to my life of empowerment, dignity and respect. I was supported during my distress and as I processed the experience, and made a complaint. I will never see the woman again. The impact of my experience has been long term. Many people with disabilities don’t have the resources and support that I have to deal with the experience. Some can’t, or choose not to complain, enduring similar experiences many times over. Some are physically violated.
I was given a role to play by the person I depended on. The role of ‘child’, or ‘needing mothering’. It was easier to play the role then to fight to be the mutual adult. I had limited energy. I kept the peace with her. Though assertive, I quickly became passive. I was parented, thus evoked to respond from my inner child. Her assertive assistance undermined my autonomy. Her manner towards me defied the values of my work and of Voices for Justice. I was surrounded by people who valued empowerment and dignity. With my inner resources diminished, and focused on the political tasks at hand, I didn’t reach out to anyone. If a support worker doubted the competency of a performance poet and political lobbyist, she would doubt the competency of many of her clients. People with disabilities who are continually parented and undermined may be conditioned to play childlike, passive roles.
I arrived a professional
an activist, political
I was mothered.
Recognised was my intelligence
yet in question was my competence
to know what was needed
to name the support I needed
met with an overriding
As I recognised
the support I’d like
withdrawing, I declined
playing into the role
I was expected to play.
With the word ‘darling’
tone of voice matching
I was set in place
not to speak horizontally to you
but diagonally up to you.
My privacy I’d always assumed
Your entry within, you assumed
in a statement
not a question of permission
charging shock through my system
by paralysis tailed
I was unable to communicate
to my peers that I wasn’t okay.
Left with a grime that doesn’t wash away
with the falling of hot water
scented soap lathers
only with the passing of time
the seeking of God
for his cleansing.
calls for a response from the inner child
rather than from the mutual adult.
whose needs this fulfils.
To extend a role of support
beyond that needed
beyond that wanted
beyond that requested
other than requested
calls for surrender
a sense of powerlessness
a sense of control
ownership of self
flesh, so intertwined with soul.
Ownership, the granting of permission
rather than submission
to in regard to one’s selfsomeone else's decision.
Winner of 2015
Winner of 2015: Jackie Warrick for the entry, "The Ghost Hunter" which addresses the fictitious scenario, "You are a ghost that haunts the infirmary of an abandoned mental institution. Somehow, dimensional transcommunication has been made possible with an avid ghost hunter. Narrate your story by reflecting upon your mortal life, what keeps you bound to this place, and the eternal wisdom of disembodiment."
This regal Victorian Institution with its grand towers and rambling gardens stands proudly indignant, but like most buildings of this era, there appears to be a dark shadow that looms behind the double entrance doors. What torment was experienced by patients here? Why do many trapped souls still lurk in the shadows of long abandoned corridors? What terror has leached into the limestone walls tormenting those who enter now at their own peril?
. . . . . .
Look at them all, insipid ghost hunters, scared out of their minds, startled eyes, erratically twitching their torches, reacting to the slightest creak in the floorboards or rattle of the windows. They jump at shadows cast by the moonlight. The heavy air thick with moisture chills the ghost hunters to the marrow. And there is some consolation in these encounters, for me a lonely ghost that roams these empty rooms, because I can inject a shard of terror into these scavengers. This terror is a small token for the torment suffered by myself and other patients, some who have moved on, and some like myself, who are trapped between the walls of this lunatic asylum.
These ghost hunters do not come to help us. They may pity us, but they merely want to gloat about their adventures here to their friends–it makes for riveting dinner party conversations. But it wearies me, because we are trapped and yes, we are desperate for the light but can't move on...we know not how and with unfinished business... how can we?
I do have feint memories of light, of the warmth of human connection, of being encased in a body and of being in the thralls of ecstasy. But it has been decades and the pain has obliterated much light and I lurk in the shadows. What keeps me bound to this place? Am I waiting for salvation for past transgressions? Do I fear the unknown...the wrath of Hell? The pain is a heavy shackle that chains me to this space. But there is some small solace in tormenting these hunters of ghosts...
Here is another scavenger, she has left the marauding pack and is calmly surveying the infirmary. Something in her manner, her dress, separates her from the others. She doesn’t have all the sophisticated gadgetry, the mandatory requirements for a meeting with ghosts. No infrared goggles or electronic voice projectors. No ghost meters. Just herself–interesting...
The ghost hunter notices the chill in the air and goosebumps prickle her skin. She senses the pain and instead of reacting to it, even getting excited by it, she lets the horror move into her heart. There it coalesces into a need to connect and to help alleviate the torment caused by the Victorian establishment with its discriminatory practices and inhumane treatment of vulnerable human beings. The ghost hunter sits down on the dusty floorboards and brings out a white candle and lights it and places the candle carefully in front of her. She brings out a notepad and pen.
But I want this ghost hunter to feel something of what we have suffered, one long black moment to the next moment that is just as bleak. I can make even the most experienced ghost hunters feel like they are losing their grip. It is easy, for it is the world I have inhabited for decades. I make the room icy cold and make the candle flicker violently. I channel through energetic vibrations the terror and pain I have felt here on a daily basis into the pores of her being. I know she struggles to hold form and I can sense her neuronal circuitry almost smoking and can see the visions haunting her. Compulsions of clawing the whitewashed stone walls to the quick of her fingernails, of having her head rammed through the window and iron bars that cage the animals within. Of screaming into the void a shrill sound wave that echoes through the sleepy country town, waking the sensitive townsfolk with an acknowledgment of 'oh, there is the cry of the unfortunates.'
The ghost hunter is possessed by demonic forces that engulf her being. She writhes snake-like in agony across the floorboards. Now there are several of us tormenting her, moronic voices chant “slut”, “whore”, “tramp” and “witch” into her headspace and the words reverberate through her skull. '”Now let's burn her at the stake,” we all roar with contempt.
She is in such psychic agony that she is about to smash her skull against the wall when she catches a glimpse of the flickering candle that draws her momentarily back into the room. Despite being exhausted and confused she senses an energy moving her. She opens herself to it allowing expression and relief. She begins to write with tremulous fingers as thought forms are projected via the written mode through to her.
“What is your name?” the ghost hunter whispers into the blackness. “I come in peace. I have helped others move into the light. My spirit guide can lead you there if you wish,” she stutters through a clamped jaw. “Will you let me help you?” she pleads.
She fears if she doesn't make some attempt at connection she will be picked to bits one menacing psychic attack, after another, until she too becomes the lunatic in the asylum. She pauses and feels her fingers twitch across the page as a violent energy moves them. Her pen scratches out the words “My name is Molly.” I manage to communicate. It takes all of the strength out of me. Yet I haven't found another ghost hunter capable of this before. She is unique and still open to my energy despite the agony I have inflicted and I am intrigued enough to keep communicating.
“What keeps you here?” the ghost hunter whispers gently.
“My husband had me admitted with Melancholia after the birth of my third baby in 1915. And then ran off with the maid.” I communicate through writing.
“I am sorry,” says the ghost hunter.
“I need to know that my children are okay...I can't move on until I know they are alright?”
“What are their names? When were they born?”
“Elizabeth O'Toole born 10/06/1934...,” the pen scribbles across the page, then pauses.
“Please, I know this is heartbreaking for you, but I just may be able to locate one of your children and bring them back to you, so you can communicate with them. It has been done before, but I can't guarantee anything. Please your other two children...?” The ghost hunter cries into the darkness.
“James born 28/12/1935 and Eva my baby born 6/08/1937. I miss them terribly.”
“I will do my best,” says the ghost hunter.
The ghost hunter blows out the candle and briskly walks out of the infirmary just as the tour leader is about to lock up.
“What happened to you? Did we leave you behind?” He peers at her with incredulity.
“No, just lost my scarf and had to go back and find it –got it now,” she holds it up smiling.
The ghost hunter walks briskly to her car and roars down the freeway. Did she imagine all this and in a dissociative spasm write this encounter in her notebook? No, the encounter felt real and the only way to ascertain its truth was to check the archives at the Public Records Office in Melbourne to see if Molly O'Toole had been interned in the infirmary and if her children really ever existed.
The ghost hunter felt that if she couldn't relieve Molly's suffering it would torment her dreams and waking moments for the rest of her life such was the palpable agony she experienced. Molly must be given the right to finish her business and to move on. She felt that this could drive her close to insanity if she did not quickly find a resolution.
. . . . . .
“We are here now,” says the ghost hunter. “I have found your youngest daughter Eva (now 83 years old) and she wants to talk with you.”
The candle flickers and the ghost hunter knows that Molly recognizes Eva as her long lost daughter and they are in attunement. She takes out her notepad and her fingers twitch wildly across the page.
“Thank you...Eva I never meant to hurt you. I am sorry you were taken from me. I am sorry you didn't get to know your Mother. I have always loved you. All of you... Elizabeth, James and you my baby. I was randomly beaten, starved, forced to take cold baths, kept inside with no sunlight and forced into solitary confinement during bouts of Melancholia. Every day we had to sit still for hours on wooden pews, while patients dropped dead around us. I died after a decade of suffering in this hell hole. I wanted to die earlier and tried to take my life several times. We were violated in every possible way. Your Father incarcerated me here and took you all away from me–I am so sorry Eva. Can you forgive me?”
Eva sobbed wildly when she saw the writing.
“It wasn't your fault Mama," Eva moaned into the night air." You were not well, these days they have medication to treat Melancholia. But Mama, you should be proud of us because Elizabeth had 4 children and now there are 8 grandchildren and two great grandchildren. James died in combat but served his country valiantly and I have had a good life, although never married and worked many years in a fulfilling career as a nurse. But Mama it is time to let go. You were always loved and we never blamed you. What you have endured is a living hell and we wish you now much light and love.”
“Molly, my spirit guide can help you,” says the ghost hunter. “He is gentle and can help you de-manifest and move into the light. Please trust us. There is no need to keep suffering. It is time.”
“Okay... ” I whispered mournfully through the scrawled handwriting.
The ghost hunter closed her eyes and with arms outstretched invoked with a strong voice her spirit guide.
“Saint Michael the Archangel,
defend us in battle;
be our protection against the wickedness
and snares of the devil.
May God rebuke him, we humbly pray:
and do thou, O Prince of the heavenly host,
by the power of God,
thrust into hell Satan and all the evil spirits
who prowl about the world seeking ruin of souls.
The ghost hunter said this three times then made her petition.
“Bring protection to Molly who has suffered at the hands of a society and system that was meant to help her. Bring protection to her children Elizabeth, James and Eva. Help all other trapped souls here to find release and the light.”
A deafening silence ensued that was broken by a loud cracking sound that reverberated off the walls. The chill seemed to lift and two pulsating orbs appeared. The room now illuminated as the two disparate forms appeared to merge into one ball of light that drifted through the glass in the window and into the night air.
The ghost hunter helped Eva walk through the infirmary and out into the car park. They both felt drained but were buoyed by the warmth in their hearts. Eva wrapped her arms around the ghost hunter and whispered “free at last,” and we both looked skywards and we could see a bright orb making its way through the night sky into another dimension. We let out a sigh before laughing and crying and dancing with joy.
Inaugural Winner of 2014: Debra McClure for the entry, ‘The Prison of the Mind’ which addressed the question, “Reflect upon a mental and/or physical illness, disability, or injury and how it prompted a revaluation of your belief system.”
“Each of us lives within . . . the prison of his own brain. Projecting from it are millions of fragile sensory nerve fibres, in groups uniquely adapted to sample the energetic states of the world around us: heat, light, force, and chemical composition. That is all we ever know of it directly; all else is logical inference. The senses are the portals to the mind.” Biocca, The Cyborg’s Dilemma
She was sitting on the edge of the bed sobbing like her heart was broken. “Mum,” she sobbed, “I am such a fuck up that no one is going to pick me next time.” “No love,” I said. “I picked you this time to be my daughter and I would always pick you again.” My heart broke hearing this and I felt like dissolving into a flood of tears onto the bed next to her. But instead I did what I always do–kept my face neutral, swallowed down that lump, and set myself into carer mode. With a steady voice I said, “Come on love, it’s time to go to the see the doctor. You are not well and need some help that I can’t give you.” “But I killed Grandma Mum, I did. I was with that horrible boyfriend and if I wasn’t with him Grandma would never have died,” and so go the conversations I had with my daughter last month before getting her admitted to the Mental Health Unit where she still is a month later.
My daughter is very beautiful. She is slim; she dresses quirky with perfectly applied make up; and she has glossy straightened hair. Nothing on the outside will show the torture she is often feeling inside. And this is what hospital staff note when we go to the hospital to get some treatment–a young beautiful totally in-control girl whom they think is fine. “I have schizophrenia and I am not feeling very well,” she tells them. This is huge her telling them this. She is acknowledging her disease and asking for help. They look at her and tell us to take a seat.
The wait begins until finally, hours later, we get ushered into the room with the big glass window. A doctor arrives and pronounces her to be in good physical health and tells us the psychiatrist that is on call will be with us soon, he’s having a particularly busy night they say. Hours later he arrives, flanked by a couple of students who find my daughter’s psychosis very interesting indeed. For the fifth time that day we answer the same questions. “Are you hearing voices?” they ask. “No,” she says, “they show me pictures”. Pictures, now there’s a new one. And who are they? Every time my daughter experiences psychosis she becomes a whole new person. This time she is social, chatty, and even slightly flirtatious. “Has your daughter been diagnosed with anything?” they ask me, as I nod my head and try to give them a history in a very short time. “My daughter,” I say, “was diagnosed with ‘Acute Paranoid Schizophrenia’ in 2009.”
This is quite a label to wear and have placed on your shoulders as a young person. It took her many years to accept this and to realise that she does in fact have a mental illness. It has been quite a journey for both of us. For me I am her mother, her carer, and her jailor. I look after her and try to make sure she is safe and happy from the thoughts, pictures, and words that distort her brain. I take her to the hospital and stand by as they sign away her rights, making her an involuntary patient. I visit her there nearly every day. She may not know it at the time as she is locked in a place of no time. She is, she says, “Living in the moment.” That moment may be pleasant where rainbows appear and she has tea with the Mad Hatter. It is from this place that she does not want to leave. Or it could be hell for her as people’s faces distort into evil and they are all out to harm her. This place is hard for her as she rejects the very people that are trying to help her, flushing medications down the toilet as they have poisoned them.
I have always been a person that relies on natural remedies, vitamins, and foods to heal my children and yet here I am now standing by as they come into her room with a needle full of chemicals that will travel around her body and up into her brain. “This one,” they tell me, “goes straight into the brain; it’s a much purer form.” Oh yay, pure potent poison. These chemicals make her sleepy and less responsive to the world. They will bring up “the hunger monster” where no amount of food will take away that feeling of never eating enough. It goes against everything I believe in but I talk her into the medication. I hassle her about it even every single day.
So we all have a set of beliefs that we mould our world and daily life around. How we feel about ourselves in any moment defines how and who we are. Belief systems are stories that we tell ourselves to define our own personal reality. These stories help us make sense of the world around us. A belief is defined as a “basic unit of meaning that takes the form of a mental image or idea that colours a person’s perception, motivates a person’s interactions, and activates a person’s emotions (Bogdan, 1986). Schizophrenia is a disease that attacks and changes a person’s belief through changes made within the brain.
My bookcase overflows as I read and learn and educate myself. Schizophrenia, I learn is “a splitting of the various parts of the thought process” (Torrey, 2001). It is a disease that alters the senses and because of this alteration, a dysfunction within a person’s perception occurs (Torrey, 2001). Perception, they say, normally requires a sequence of stimulations” (as cited in Spinelli, 2005). Information is sent to the brain at a speed that is “close to that of sound” in the form of electrical signals carried there by nerve fibres (Spinelli, 2005). Beck, Rector, Stolar, and Grant (2009) state that external light or sound waves are received by the sensory organs and are then formed into mental images. Any sensation that is received they say, “is not a reliable mirror of external reality. What we perceive as real can be a gross distortion of the actual patterns of external stimuli.” They suggest that “. . . things appear to humans the way they do because that is the way in which their cognitive faculties translate the world for them . . . (Cazeaux, 2002)” For individuals suffering from schizophrenia the filtering process is flawed.
Our brain, I learn, normally screens out most of what stimulates the sensory organs, a screening process which allows an individual to then concentrate on whatever they choose. Schizophrenia impairs this screening process; therefore stimuli flood the brain with an excess of incoming sounds and vision. The mind of the individual is inundated internally with thoughts and memories, as well as with external stimuli through sights and sounds. This leads to psychosis, a state in which the person becomes delusional. Delusions, I learn, are fallacious beliefs about consensus reality.
Delusions occur due to an overstimulation of the senses, resulting in the brain’s lack of ability to adequately respond to and interpret the stimuli. According to Torrey (2001), delusions are a distortion of ideas that are believed to be real by the person experiencing them but not so by others around them. These distortions are usually based upon sensory experiences that have been misinterpreted by that particular person. People who experience delusions have no reasoning powers and remain unresponsive to external signals indicating otherwise. Their sense of reality has become distorted through the processes of the brain.
It’s all so very interesting, don’t you think? Beliefs making up our reality through stimuli fed into the sensory faculties. Each of us unique and individual, yet living and existing as a whole. I often contemplate my belief system and therefore my reality. I have my reality at home where I can be myself if my daughter is well. I do my best to fit in with her when she’s feeling unwell. I have my reality at work where I adhere to a certain set of beliefs. At present I have the reality of the Mental Health Unit at the hospital where I visit and co-exist comfortably for a time with them all: I wave to J who is sweet and weird; I say hi to N, whose make-up is childish and ever so thick; make-up that is quite acceptable in this setting; and I upset P by telling him, “No I am not interested in taking Satan’s baby home when it is born here later today.” They all co-exist in a reality that is safe and comforting to them. They can all be who they are in that moment, living by their own set of beliefs–living their lives as defined by the stories they tell themselves. My own belief system and reality depend upon where I am. In many ways I’m just like my own daughter; I live in the moment.